Talk:Unrefreshing sleep

This 2016 Jonathan Kerr study is pure garbage in relation to ME/CFS. He studied fatigue and sleep disorders in relation to it. Just what this disease needed, again; a study that completely ignores and completely nullifies a bone crushing neuro immune FAILURE, body systems FAILURE and immune FAILURE disease. He is exactly the type of "researcher" drug companies love.--DxCFS (talk) 09:32, 10 August 2016 (PDT)

Thank you for posting this. This is the biggest thing I love about MEpedia - how much I'm learning. Perhaps the remedy is to add a critique about the study. For example, to say that PEM was not used as an inclusionary symptom. That the broad criteria would capture those who didn't qualify for a CFS diagnosis using ICC, CCC, IOM criteria, (or whichever that apply), etc, etc. Kmdenmark (talk) 10:52, 10 August 2016 (PDT)

I think your changes read very well. One question, though. Do you mean SEID as the broadest definition? I thought Oxford and Reeves were broader and captured more people with a diagnosis than SEID. 14:34, 10 August 2016 (PDT)

Oxford and Reeves are the most corrupted and I believe purposefully corrupt, in my opinion. Fukuda is a mistake without PEM. SEID is the broadest correct definition, as I believe they are actually capturing the broad picture of ME/CFS and its large severity impact. In my opinion. But if you want to change what I wrote please do. I think my opinion may be, well, my own.--DxCFS (talk) 16:54, 10 August 2016 (PDT)

I think I understand what you are saying now. I agree with you that SEID may be the best case definition to date. My confusion was with the word "broadest." I was interpreting the word to mean "counts the most people" irregardless of who or what they really have, i.e., covering a wide scope of subjects. If I'm reading you correctly, you are saying "broadest," as in, capturing most of the disease presentation. I've read other writings where the phrase "broader definition" was a negative. Maybe another word for broad will clear up the confusion. Do you like "including the most specific definitions", or detailed, or precise? Kmdenmark (talk) 19:13, 10 August 2016 (PDT)

OK, I gave it my last try but I am on my medications for the night and if I type anymore I may go into conspiracy theory mode. (You don't want to hear my thoughts on JFK, or do you?) : ) --DxCFS (talk) 19:59, 10 August 2016 (PDT)

Love it! Great job! Much clearer!21:16, 10 August 2016 (PDT)

I LOVE these changes, thanks to both of you - it's brilliant to include poor studies, but use them as an opportunity to educate the reader about WHY they are poor. I dream one day all studies referenced in MEpedia will be marked with the definition used, was it peer-reviewed, was it blinded, was it randomised, the sample size etc, so we have a set of criteria that will clarify flaws in probably most of the studies, and it's so great to help educate patients. I've learnt a huge amount myself. I've copied the new expanded study entry across to Kerr's own page too. Olliec (talk) 00:40, 11 August 2016 (PDT)

Thank you both!--DxCFS (talk) 07:17, 11 August 2016 (PDT)

post-exertional malaise (PEM) - A notable exacerbation of symptoms brought on by small physical or cognitive exertions. PEM may be referred to as a "crash" or "collapse" and can last for days or weeks. Symptoms can include cognitive impairments, muscle pain, trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, and others.

International Consensus Criteria (ICC) - A set of diagnostic criteria, based on the Canadian Consensus Criteria, that argued for the abandonment of the term "chronic fatigue syndrome" and encouraged the sole use of the term "myalgic encephalomyelitis".

Canadian Consensus Criteria (CCC) - A set of diagnostic criteria used to diagnose ME/CFS, developed by a group of practicing ME/CFS clinicians in 2003. The CCC is often considered to be the most complex criteria, but possibly the most accurate, with the lowest number of patients meeting the criteria. Led to the development of the International Consensus Criteria (ICC) in 2011.

National Academy of Medicine (NAM) - An American non-profit, non-governmental organization which provides expert advice to governmental agencies on issues relating to biomedical science, medicine and health. Formerly known as the Institute of Medicine (IOM).

systemic exertion intolerance disease (SEID) - A term for ME/CFS that aims to avoid the stigma associated with the term "chronic fatigue syndrome", while emphasizing the defining characteristic of post-exertional malaise (PEM). SEID was defined as part of the diagnostic criteria put together by the Institute of Medicine (IOM) report of 10 February 2015.

blinded trial A clinical trial is blinded if either the participants or the researchers don't know which treatment group they are allocated to until after the results are interpreted. (Learn more: www.nottingham.ac.uk)